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Why call at all?

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

My doctors nurse just called to tell me 2 of 3 parts of my BMB results came back. So far it shows no cancer...BUT...the last part is still needed to "CONFIRM" no cancer. I was just so happy to hear about the 2 parts being cancer free that I failed to ask anymore questions like...what part are we waiting on...blood work...tissue sample...or bone sample???? Now I'm thinking...why the heck call me if you don't have ALL of the results? This is frustarting as hell. Don't they get it? Don't get me wrong...I'm glad 2 parts are clean, but if the third part isn't, then it doesn't really matter about the other two parts...right. Set me straight if my thinking is out of whack here.
Sue

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue, What did you expect,anything less. Like we don't have enough to worry the crap out of us and they call you with that. Then again, what they did call and say was at least good news. I hope its not in the bone marrow but remember if it is it will be treated the same. Unless they want to wait till it gets in there too. Some places do and I don't know why. I was a stage three and they did the wait and watch thing. After they did the bmb they decided it was time for treatment. John

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Good news is good news! It's positive!!!!! They do follow everything to the letter..... fingers and toes crossed for the last part!!!! praying for you Sue Vinny

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

WOO HOO!!!!!!!!!!! 2 OF 3 IS FANTASTIC NEWS LADY!!

As for calling with "part" of the results, I tried desperately to get my surgeons office to tell me what they had... The nurse just kept saying they didn't have them all back yet. I was a freaking mess!

It took 2 weeks to get my results because they sent them to Mayo Clinic for confirmation and second opinion. At least mine was consistent....wouldn't tell me a damn thing.

I'd call your nurse back and specifically ask why on earth they would do that, it may have been a mistake and she didn't realize they didn't have everything. My surgeon is the one who called me though.

Take heart and celebrate the great news you DO have. It really is wonderful news honey. Just hang in there, it's getting ready to start soon. Waiting is by far the hardest part of cancer.

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Ohhhh, your just gonna love this... the heart clinic called "late" this afternoon to tell me when to come in for my test....are you ready....AUGUST 22nd would be the very soonest they could get me in. Also said I was 5th on the list for an earlier appointment if someone cancelled. ha!ha!ha!ha!ha!ha! I won't even bore you with the details on how I handled this news.... but I will tell you this.....by 5:00 tonight my appointment is scheduled NOW for Friday at 10:00.
Oh Oh Oh it's Magic....ha!ha!...Sue

P.S. Vinny.. I'm tryin buddy...I'm tryin to stay positive, but man oh man..these phone calls can sure mess up a good day!

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

SUE, I LEARNED A LONG TIME AGO IF YOU SIT BACK WITH YOUR FINGER UP YOUR WHATEVER YOU WILL BE LAST IN LINE EVERY TIME. SOME PEOPLE NEVER LEARN THAT. THEY GO WITH THE FLOW AND END UP DROWNING. I HATE TO KEEP SOUNDING SO NEGATIVE ABOUT SO MANY THINGS, BUT ITS THE WAY IT IS SOMETIMES. I CAN IMAGINE WHAT YOU SAID AND IT MUST HAVE WORKED. YOU GOT YOUR APPT. MOVED UP. I AM GLAD YOU DID.IT DOES MAKE YOU FEEL MORE POSITIVE WHEN YOU HAVE CONTROL OF YOUR CARE. I USED TO TELL PEOPLE WHEN I SAW THEM GETTING DUMPED ON TO SPEAK UP. I GAVE UP ON THAT A LONG TIME AGO. IF YOU HAVE TO WAIT AN EXTRA MONTH FOR A TEST THAT POSTPONES YOUR TREATMENT. ANOTHER MONTH TO SIT AND WORRY. GOOD FOR YOU AND KEEP UP THE GOOD WORK. WE ARE BEHIND YOU ALL THE WAY. JOHN

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hey John...I'm getting the hang of this waitin routine..ha! What these people don't understand is that the longer they make us wait, the smarter we get. I calmly told my doctors nurse today that I thought I should move my cancer care to Seattle. I'm pretty sure the magic word was "Seattle". Alot of people from here go to Seattle for treatment, which of course hurts the smaller clinics here on the Eastside of the Cascades. I'm boneing up on my list of "magic" words for future reference. Hey...when you have this much time on your hands...whats a gal to do?...(laughing wickedly) Golly, I'm finding this rather fun, which is kind of scary in itself...ha!.....Sue

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

The quicker you learn the rules of the game the better your chances of winning. If people are willing to wait and mess around, they will surely let you, while they are busy curing those that are not. There is something to be said for the squeaky wheel theory.Well informed patients are not only an asset to themselves but to the MD's as well. It makes everyone's job easier. As to your heart ultrasound, try not to get too confused about which kind you are getting. I did not have the muga type but had a ultra high tech one that took about an hour or more.I think it's decided on a case by case basis. At first when I found out that there was more then one type I thought I was maybe short changed but after talking with my MD I understood and was just fine with it. As to the type of treatment you will receive again it will be based on your particular situation and many factors go into that decision. R CHOP and R CVP are not the same but both are effective. Which is used will be solely based on which is best for YOU!! There are reasons for one over the other based on the whole picture. Always remember during this confusing and stressful time that all of us have so much in common but at the same time we all have differences that make our treatments slightly different. They will tailor your program to you. Trust what your MD's choose for you unless they give you reason not to. Best of luck. Mary

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue, Mary is 100% correct about the two treatments not being the same. One of the drugs are different. They had me set up for r-chop until I had the heart test. It was changed to r-cvp. I jumped right on the computer to find out the difference. I had never heard of r-cvp,of course I was totally new to all this and barely heard of r-chop. I do not know how old the article is,but I typed in r-cvp vs r-chop(Googled it). You could always check it and see what you get out of it. Again, I do not know how old the article is and when you read some of the write ups you have to take that into consideration.

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Mary and John...
I've been doing pretty good with my researching and learning alot about chemo. I've figured out when to stop looking and also which information may or may not apply to me. Last night I spent 2 hours trying to research my doctor. She's fairly new at our clinic here so I thought I'd dig around and see what I could find out when she was in New York at the Brookdale University Hospital. You can't really find out too much un-less you fork over some money for someone else to search out the info. Soooo I wasted 2 hours, but what the heck...it was fun trying. My sister is a hospital administrator at a large hospital in Illinois, so she is going to do an in-depth research for me. She has access to all kinds of information that I couldn't get at, so this will be interesting. Any hoot...while I wait for the test results I just keep busy, and before I know it I'll be telling all of you that I'm on my way for my first round. I'll have lots of questions by then, I'm sure. Have a good day...I sure plan too!
Love...Sue

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Sue,

Each State tracks their licensed professionals. You should be able to access this information using any search engine. The information found there will include any disciplinary action, schools that they've attended and graduated from as well as other interesting information.

Good luck,
Kellie

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Kellie...
I'm not the brightest crayon in the box when it comes to navigating computers, cell phones, t.v remotes etc. For instance...I don't know what it means when you add someone to your friends list??? I added a few people from here, but don't know what to do now that I did it. I learn fast, but it takes awhile for me to figure all the ins and outs. I did find out some info about my doctor but in order to find out if she has any disciplinary actions I would have to pay $12.00 over the net to access that info. I'm not that desperate yet...ha! My sister will get back with me this weekend and let me know what she found out and that should be enough for me. Thanks for caring and posting your information to me.
Sue

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

We each have different strengths, that's what makes life so much fun! I can't spell to save my life! Thank goodness for spell check!

If you copy and paste or just type in: www.noah-health.org/en/usmd/state.html

you should be able to pick the state you live in and then search for a doctor by name. I tried it, using two different states. I was able to get licensing information for free. It provided hot links to actions involving the licensee and the out come of investigations. The States must act in the best interest of the people; it is the states' "job" to make sure that licensed professionals maintain the standards set by each state. A violation of these standards, is public record. I am also very thrifty....I would not pay for anything that is a public record, sometimes it's more convenient but, then there goes my coffee money! Good luck. Please let me know if you're able to use this info.

I will be thinking and praying for you and your husband on Monday morning. You can handle whatever comes your way..you are a woman of spunk!!! Kellie

yesyes2
Posts: 461
Joined: Jul 2009

Sue,
The heart ultrasound is a piece of cake. No needles, icky things to drink, or radiation. You'll do just fine.

Lord love these doctors who think we can wait forever. I love your spunk and you are really a hoot to read. These doctors offices better look out for you and your husband.
I just loved how your husband handled the BMB delay. He should give lessons.

Let us know how you did.

Blessings to you.
Leslie

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Kellie...My sister called and gave me a 2 thumbs up on my doctor. She said she ran my doctor through her hospitals data base..(??) and there was nothing on her...no disciplinary problems or anything that would raise a red flag. My sis and I had a good laugh and decided if I make it through this cancer we should open up a bounty hunting business...ha! She said she broke so many rules researching my doctor that she had to go home and have a stiff drink before calling me...ha! She's such a drama queen. Thank you for the web site...I booked marked it and will use it for future reference instead of putting my sister in a spot....even though I know she secretly loved playing detective for me...ha!...Love...Sue

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue what do you mean "IF" you make it thru this cancer? You are going to make it thru with flying colors. I have no doubt about that. I know there are times that doubts go thru our heads, but this is supposed to be one of the most treatable ones out there. At least that is what I have read. Again, if I am wrong somebody correct me please. John

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

OOPS John...you are sooooo right! I "WILL" make it through this. I didn't even realize I said that. (Slap, slapping my face)ha!!!!
Sue

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

The heart test was a walk in the park and the little technician was just as sweet as could be. We talked and laughed and by the time we were done I felt like I had a new friend. She was the same age as my youngest son..(31) and I was so impressed with her professionalism for being so young. She said I smelled like her mother..apparantly her mom wears the same perfume as I do..(Gloria Vanderbilt). We had a good laugh about how her mom won't wear anything else as I am the same way. She hugged and kissed me when I left and said "you sure don't act like someone with cancer"...ha! I told her she needed to stop by around mid-night each evening and she would see a whole different side of crazy going on with me...ha! She actually told me to call her if I needed someone to talk too...how cool was that? A total stranger. People can be sooo awesome at just the right time.....Love...Sue

yesyes2
Posts: 461
Joined: Jul 2009

Sue, that little tech just saw what we all see, a giving, warm, funny and compassionate women. What a positive experiance for you. Take care, Leslie

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Sue, there's a book just waiting for you to write it! Please keep posting....you bring such laughter to my heart! And that, is GOOD MEDICINE! Kellie

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